Amyotrophic Lateral Sclerosis: Helping You Cope With Your Disease

Lou Gehrig was a famous baseball player who died of amyotrophic lateral sclerosis in 1941, and his name is often given to the disease.

Amyotrophic lateral sclerosis, or ALS, is a serious and fatal neurological disease that causes weakness of the muscles, disability and eventual death.

Its occurrence is 3 in 100,000 people worldwide, but little is understood about why some people get it and others don’t, though about 10% of cases appear to be hereditary.

Because the majority of cases appear to be randomly occurring, researchers are investigating possible causes of amyotrophic lateral sclerosis.

Science has come up with several answers to the question, by examining those who have the disease to find what they have in common.

The findings include damage by free radicals, excess glutamate in the spinal fluid, and auto-immune responses leading to antibodies attacking healthy cells.

Risk factors seem to include heredity, being aged between forty and sixty, and military personnel seem to have a higher risk factor.

The early symptoms of twitching and weakness in the muscles of an arm or leg will probably have taken you to your doctor, and you may have been referred to a neurologist. It may take some time to form a positive diagnosis, as the early symptoms could be related to a number of conditions.

This waiting time can be upsetting and stressful, particularly if you are unsure what is happening. You can help in this process by keeping an accurate record of your symptoms, when they occur, how often and for how long they continue.

This valuable information helps the doctors find a pattern that could help in your diagnosis. It will help you to feel as though you are doing something positive to help.

There will probably be lots of tests, which are done to help the doctors come to an accurate diagnosis. Your reflexes, muscle tone and strength, coordination and balance will be tested. Diagnostic tests may include MRI, electromyogram, spinal tap, urine and blood tests and muscle biopsy.

Treatments will be aimed at slowing the progress of the disease, making you comfortable and keeping you independent. There may be medications like riluzole, which appears to slow the disease and some pain and fatigue relief.

Physical therapy will help you maintain muscle strength and mobility; occupational therapy can help you learn to use a brace or walker when the time comes; speech therapy will help you communicate.

The news that you have been diagnosed with amyotrophic lateral sclerosis will undoubtedly have devastated you and those close to you. Allow yourself time to grieve and mourn your condition, and let your family also grieve.

Try to be hopeful about your future; life expectancy is improving for people with ALS. Remember, you are still the same person emotionally and intellectually, so find rewarding ways in which to live your life with your disease.

Join an ALS support group for understanding and support for yourself and your family. Enjoy your life day by day by having made some of the difficult decisions about the future for yourself.